My youngest child was born in 1993 and within a few minutes of her birth we were informed that she has Down syndrome. Those few words changed my life.
I had left my house on that November morning to have a scheduled C-section, my 4 year old daughter and my 2 year old son were at my mother-in-law’s. It seemed strange and scary to be going to the hospital without being in labor. It was just so different from my other deliveries—little did I know just how different it would be.
Until this point, things had been pretty ordinary—I’d lived a pretty straight-line life. I grew up in a suburban home, went through school, went to college, graduated, fell in love, got married, and had a couple kids. I was a part-time nurse, most of the time mom, active in play-groups and my church, voted in most elections and obeyed most speed limits. I argued the benefits of breast vs. bottle, cloth diapers vs. disposable and paper vs. plastic and worried that I was wasting my life. I didn’t know what I wanted to do when I grew up.
Jenn’s birth gave me focus—cleared away any uncertainty about who I was and what I was supposed to do with my life. When Jenn arrived I knew that preparing her for the world and the world for her was my calling.
Some people thought I was nearly an expert on disability already. After all, I had volunteered teaching religious education to kids with disabilities when I was in college, had shared an apartment after college with one of my high school friends who has Cerebral Palsy, and I had been a nurse for 10 years by that time. The truth was though that I knew the things you know about Down syndrome when you don’t know anything about Down syndrome!
Acutely aware of my ignorance I started reading—a book a day—for months. I have always been a fast reader, but my anxiety threw me into overdrive. I joined the local Down syndrome parent group, and I searched on line. The unfortunate thing was that much of the information I gathered would not be pertinent to my daughter for years, yet I didn’t feel that I had a choice. I had to keep learning so I wouldn’t miss anything.
Finally one day I received a flier for a workshop where a woman named Kathy McCarthy-Proulx from an agency called The Advocacy Center would teach Hands-on-Advocacy. I felt like I’d ‘seen the light!’ It dawned on me that the reason my search for more information could never end was because I didn’t just need information—I needed skills as well. If I acquired some skills then maybe I could relax. Maybe I could be confident that I would be able to access information and support when I needed it. Maybe I could afford to breathe—and maybe I could even read a novel now and then!
I took that class and indeed, my desperation lessened and my learning became more focused. Then I took one about Early Intervention (the education program for children under 5), then another and another. In addition to information and skills I met amazing people. The folks that taught these workshops were mostly parents of children with disabilities themselves. Their knowledge and experience from years in the trenches and their generosity in sharing what they knew was invaluable—I wanted to be just like them.
My fellow attendees were also a great group of people, eager to learn and grow and make things better for their kids. These folks became a network of support and friendship that I still rely on today.
Eventually I moved from gathering information specific to my daughter to wanting to help others. I learned about laws and systems and how to affect them. I became the president of my local Down syndrome group. And I kept attending periodic workshops culminating in 2002 with Partners in Policymaking.
After graduating from Partners I was an energetic advocate. I helped organize a statewide rally about IDEA (the Individuals with Disabilities Education Act), helped form a statewide disability coalition, attended rallies in Washington D.C., testified before my county government, and presented at several workshops among other things. But after a few years of this I became very tired and very discouraged.
I was tired of writing letters, visiting legislators, making all sorts of presentations—telling people (who should know better) that they should care—over and over and over again. I was frustrated that in spite of our best efforts IDEA was finally reauthorized as a weaker law than it had been before, big business was constantly lobbying to weaken the ADA, and people I know continued to face discrimination in education, employment, transportation and more, and much of the world remained disinterested, or even hostile.
I knew advocates who had been fighting these same frustrating battles for decades, and the thought of that was just depressing.
I was working myself to the bone and so was everyone else. What was missing?
It seemed to me that the disability movement was stuck in a loop:
We lack influence.
At first glance it appears that we lack influence because we lack money.
There is more money spent on health and human services than ever before. This money does get people with disabilities through the day, providing daily care.
However, this money does not build anything that lasts beyond today; it does not create a future.
And the reason we lack ‘building money’ is because the country has different priorities—in other words, because we lack influence!
We were caught in the spin cycle and I could see no real way to change this. There will always be a war or a hurricane or some other crisis to consume the headlines and the budget. It made me weary (and dizzy) just to think about it.
We need something more.
I think one of the drastically under-explored advocacy tools available in 2008 like never before is Virtual Advocacy—on-line advocacy.
It can be free.
It’s viral’ as my web 2.0 friends say repeatedly (they mean it spreads like wildfire!)
It crosses areas that are traditionally unconnected—clinicians and parents and policymakers could follow the same blogs for example.
Recently I received notification of a pretty significant disability concern from a friend of mine whose only personal connection to the disability world is me—prior to the internet she would never have happened across this info, ever.
I have e-lists that I feed daily, I blog, I follow other sources of info regularly and pass that along to anyone who might have an intersecting interest (my school district and many of the tax-concerned parents I know were extremely interested in the effect that the proposed Medicaid reg changes could have on our school taxes, for example—and all it took was a couple of introductory paragraphs and pasting in a link.)
For the past several months I have been the Virtual Trainee for the AUCD, attempting to provide a connection between the AUCD trainees around the country and the AUCD itself on-line.
I am sure there are other areas where we, the disability advocates, could have a presence if we thought about it. (My kids rolled their eyes when I propose creating an Ava-Terri, but why not?)
(UPDATE: for an a link of what can happen when someone with a disability puts their issue out on the web click here.)
I would be interested in exploring innovative ways to combine disability advocacy and web applications…. How can we expand our visibility, our credibility, and connections with “our issues” in new ways? What are your thoughts? Where could we go that no one has gone before?
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.